“But those who dare not grasp the thorn should never crave the rose.” -Anne Bronte

Category: CHD

I was in bed last night reflecting on the present and the past. I remember a year ago thinking to myself and sharing with others that I believed grief and hope can coexist. I still believe that. But now, those two things have faces attached to them. Recently, I have been reminded of the small, mundane moments of everyday life that now cause a twinge of grief in my heart. I was working on our taxes and had to indicate that Eisley had passed away last year. For whatever reason, physically typing in her date of death into our tax preparation software was hard. It was another reminder of the finality of her passing. There was another moment from last week that caused the grief and the hope to surface at the same time. I was opening a tub of clothing in preparation for pulling out some clothes that might fit our new little one. I rifled through onesies that I had purchased for Eisley that she never had the chance to grow into. I sorted through outfits that swallowed our tiny, 13-lb, 18-month-old in their 6 month and 9 month sizes. I sadly realized that our newest addition will have outgrown these tiny clothes. What do I do with them? For now, I put them away and decided to finish our taxes. But there it is – that moment of grief and hope now paired with two faces – our daughter who passed away and the one we hope to bring home very soon. And here was the realization I had last night. If Eisley had not passed away, more than likely we would not be adopting this specific child. We weren’t planning to adopt again when Eisley was home with us. We thought our family was complete. I will not go as far as saying “we won’t adopt again” or “we can’t”. I’ve learned that when I say things like “I can’t adopt a child with a complex heart condition”, I later find myself falling in love with the most beautiful brown eyes belonging to a little one with a complex heart condition. I won’t speak in absolutes, but I will say adopting again wasn’t on my radar. If you’ve been following along, you know how that story is being written. As I grappled with the reality of losing Eisley, a thought planted itself in my heart – if we lost her, I hoped we would adopt again. And here we are a little over a year later and we should be meeting our newest daughter in less than two months.

Because of Eisley’s death, we have the privilege to know a new life – that of a new daughter joining our family. The love does not end with the life that was lost; it continues. I came across this quote tonight,

“God pours life into death and death into life without a drop being spilled.” -Anonymous

At the same time, I am reminded of another life and death juxtaposition. As we enter into Holy Week, I will pause in remembrance of His death and how I may have new life through Him. May my daughters continue to point me to the cross, to the sacrifice of the Lamb, and the great love that was poured out there.

While we were in the hospital, I was fortunate to be put in touch with a kind and generous photographer, Suha Dabit. Suha understood the hardship of the PCICU first-hand: Her daughter was born with a congenital heart defect (CHD) and had several open-heart surgeries before she received a heart transplant.

Suha’s empathy has compelled this beautiful soul to donate a portion of her time to take photos of heart children and give families beautiful memories in the midst of hard times. The way she draws your focus to the child and not all of the wires, tubes and machines is a gift. Her work is breathtaking.

I was thrilled when Suha took photos of Eisley on her second birthday. I will be forever grateful for the wonderful images she shared with us because they are tangible way for me to remember Eisley’s special day and the way we chose to celebrate her. Suha even compiled a video of all of the photos, and the lyrics of the song she chose to go with the video so accurately describe my feelings for Eisley. Here’s a portion from Matt Hammitt’s song “All of Me”:

“I won’t let sadness steal you from my arms
I won’t let pain keep you from my heart
I’ll trade the fear of all that I could lose
For every moment I’ll share with you

You’re gonna have all of me
You’re gonna have all of me
‘Cause you’re worth every falling tear
You’re worth facing any fear

You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me is where I’ll start.”

Here is the video collection of photos from Eisley’s birthday.

You can read more about Suha’s story HERE. And check out her Facebook page HERE. Follow her on Instagram at WOBHEARTS.

Thanks Suha for giving me these glimpses of Eisley that I will treasure forever.

“Sometimes you will not know the value of a moment until it becomes a memory.”
—Dr. Seuss

There were many small, joyful moments from our time in the PCICU with Eisley that I’ll hold on to as long as I can. For example, I won’t forget the few glimpses of her eyes that we were fortunate to see, the shaky finger she offered me one day as she attempted to swipe left and right on my phone to look at pictures, and the times when her heart rate would return to a somewhat normal level as I sang her lullabies. I also wanted to share a few big moments that I’m grateful for and will remember forever:

Chinese New Year & Baptism – In early February, Eisley’s condition rapidly declined, and we thought we would lose her. True to her fighting ways, she pulled through. A few days after one especially scary time, I decided I wanted to have her baptized. If she didn’t make it out of the hospital, I didn’t want to have any regrets, and our priest graciously honored my last-minute request. As this event also fell during the Chinese New Year, I took the opportunity to dress Eisley in her China silks to honor a tradition that we maintain with our older daughter. I had been debating for weeks whether or not I should bring silks to the hospital and go through the formality of dressing her. It certainly wasn’t the easiest task with all of the tubes and wires connected to her! Thankfully, our wonderful primary nurse didn’t balk at my request and even went so far as to make Eisley’s bed with special blankets and dress her in her finest silks. My darling girl looked so beautiful!

Valentine’s Day – After 40 days without holding her, on Valentine’s Day, I FINALLY got to hold Eisley. 40 days. No mother should ever have to wait that long to hold her child. I was on cloud 9 for the entire hour and a half that I held her and for the rest of the evening as well. Considering that we almost lost her the week before that, this time with her was especially poignant. Despite the tubes, lines, ventilator and everything else she was connected to that could have made holding her awkward, I didn’t hardly notice them. I concentrated on her face. She snuggled into my arms and it was if time stood still and the problems of the world melted away. Every now and then she would open her eyes, glance at me as if she was thinking, “Oh good, you are still here with me,” and then close her eyes again. I half-jokingly instructed a nurse to hook me up to a catheter and a feeding tube and I would just hold her for the rest of our time together.

Eisley’s second birthday – As we approached March 8th, I wasn’t sure what to do about her birthday. She certainly wouldn’t even realize the significance of that day as she had probably never celebrated her first birthday. Plus, under such heavy sedation, she wouldn’t know we were celebrating anyway. However, I decided it was still a milestone that required a proper celebration; not to mention, it was an outlet for me to channel all of my energy in a positive way rather than focus on gravity of her deteriorating health condition. I made a special birthday outfit for her, as I wasn’t able to slip a onesie on her. That day, both she and her sister had matching Cinderella tutus and headbands! I crafted decorations for her door and room, and my mom and brother helped me bring in food for both the day shift and night shift nurses. Our family gathered to sing “Happy Birthday” to her. We even had photo booth props on hand and captured some fun photos with the medical professionals who cared for Eisley that day. For an entire day I didn’t once dwell on any of the ups and downs of her vitals, x-rays, new diagnoses, etc. I simply focused on honoring her. I even got some birthday snuggles! I’m forever thankful for everyone who helped make my crazy ideas reality, as it made that day so special and an enduringly happy memory for my family.

It would be easy to dwell on all of the difficult, scary, and overwhelming times during our hospital stay. We certainly had a lot of those moments. However, perhaps these dark moments were necessary to reveal the value of those special, bright moments and bring an appreciation to those moments that may not have existed otherwise.

“Hope is being able to see that there is light despite all of the darkness.”
—Desmond Tutu

“We must find time to stop and thank the peoplewho make a difference in our lives.”-John F. Kennedy

I’m still attempting to process what we experienced while Eisley was in the hospital. My husband and I realized early on that we couldn’t handle this monumental burden on our own. Asking for help was not something we were comfortable with; it certainly wasn’t our first inclination. We did occasionally call for help, but more often than not, we didn’t even have to ask—so many people volunteered to help us and provide for our needs. We felt incredibly supported by family, friends, and even strangers. For that, we will always be grateful and unable to fully articulate our deepest thanks.

The actions demonstrated by others have caused me to reflect on gratitude. Robert Emmons in his Greater Good essay, “Why Gratitude is Good,” writes this about gratitude, “… it’s an affirmation of goodness. We affirm that there are good things in this world, gifts and benefits we’ve received.” He describes the importance of this “relationship-strengthening emotion” as it “requires us to see how we’ve been supported and affirmed by other people.”

I’d like to share some examples of the many ways that people supported us during this difficult time. I hope that you will see the goodness in other people and your faith in humanity may be restored as mine was.

Eisley required a lot of blood transfusions—so many that I lost count. My sister relayed to our Facebook group the suggestion that people donate blood. It wasn’t long before we had more than 40 people contact us to be added to the donation list.

When doctors began allowing Eisley to resume feeds, they told me she wasn’t a candidate for donor breast milk because of her age. However, some of the awesome staff on the PCICU floor went to bat for our girl and allowed her to have breast milk for two weeks. Near the end of the two-week period, I mentioned on our Facebook group that we were running out of donor breast milk. Within six hours I had eight people volunteer to bring more.

To maintain some sense of normalcy in the midst of all of the chaos, I decided it was essential to eat at least one meal a day with my husband and daughter. My sister spread the word, and we ultimately had more than 70 meals delivered to either the hospital or our home. Sitting down as a family to a warm meal—that we didn’t have to worry about cooking—was a huge blessing to us. Not to mention the fact that the meals were absolutely delicious! Many sent gift cards for restaurants, which was also a tremendous help since grocery shopping was the last thing we wanted to think about or had time to do.

Playing a game before a yummy meal.

In addition to worrying about Eisley, I missed my 5-year-old. A sweet friend invited anyone who was interested to send a care package to our big girl to let her know people were thinking of her, too, during this time. The outpouring of love symbolized by these packages brought me to tears—and made our 5-year-old deliriously happy!

On one of Eisley’s sickest days, a friend from Facebook shared with me that 240 children at her school were praying for Eisley. They have continued to do so.

Shortly before Eisley passed away, a kind friend communicated a prayer request to his band. That night, 20,000 people joined together in prayer at a David Crowder concert to lift up our baby girl.

Shortly after Eisley’s passing, we began to receive anonymous pieces of art at our house. I finally discovered that someone had informed a “Free Art Movement” group of our loss. The group dropped off pieces of art that were reflections of Eisley, bringing us beauty during our time of grief.

The number of cards, notes, texts, messages on Facebook, and prayers sent on our behalf are more than I can quantify. Each message and note touched my heart deeply. What a gift to know that we were held so close by so many.

A kind friend set up an account that let people make monetary donations to help offset Eisley’s medical expenses. To this day, the generosity extended to us by so many people renders me speechless. We are humbled and grateful that you would give so freely to help in our time of need.

You extended light to us in so many ways during our darkest hours. You brought hope when it seemed hopeless. You held us at times when I didn’t think we could hold on any longer. You loved on us when we were weary, broken, and worn. You encouraged us to find ways to help others, just as this help was so graciously extended to us.

Grace and peace to you today.

“Go out into the world today and love the people you meet.Let your presence light new light in the hearts of others.”-Mother Teresa

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”
—Eleanor Roosevelt

This post has been a very hard one for me to write. I’ve started and stopped the telling of this part of the story many times. It brings me back to a mental place that I didn’t want to return. I wish I could gloss over the painful memories of Eisley’s sickness and long hospital stay—or have the details fade away, at least for a time. If only I could do a memory dump and store the most excruciating thoughts in an offsite location. But it’s part of Eisley’s story and now part of mine. I hope in recounting the details of this part of the journey, I find some measure of closure to one of the most difficult chapters of my life. Despite the dark moments, I hope you will see courage and strength, love and light, and a spirit, though it may be bruised, that cannot be broken.

We were the first on the schedule for heart surgery for Dec. 28. However, we got a call the night before notifying us that we were behind a heart transplant, meaning there was a good chance the surgery would be delayed. We certainly understood having to postpone our surgery for a heart transplant, but because we didn’t know how long the wait would be, we stopped feedings and water much earlier than needed. This would be trying for any child, but for a food-insecure child it was torturous. Eisley’s security was found in a bottle of water that she clutched tightly at all times. It broke my heart to say no to her signs for “water” and “snack.” We delayed our arrival to the hospital knowing there would be nothing to do but walk around and attempt to pacify a hungry baby. I ended up pushing the stroller in laps around the hospital praying that Eisley would fall asleep until they were ready for us.

They called us to a holding room at 11:30 am and finally took Eisley back for surgery around

Hiding from the world.

1:30 pm. Before they took her back, Eisley buried her head in my chest as if she were attempting to block out the world. The anesthesiologist gave her some “happy juice” to help her relax before they wheeled her down the hall. During the procedure, the surgeon placed a band around her pulmonary artery. He hoped she would grow into it and it could help bring down the pressures from her pulmonary hypertension. Hopefully in a few years, we could do more palliative surgeries to help her perfectly imperfect heart.

Dec. 28 – 31Eisley came out of surgery looking great. Her vitals were stable and she was only on one medicine to keep her sedated. That stability was short-lived as she began to require a lot of medications to regulate her blood pressure. Her heart surgeon told me she was by far his sickest patient at that time and that she was on a downward spiral. Finally her blood pressure stabilized and they rolled the heart lung bypass machine away from her room. We hoped those were signs she was taking tiny steps in the right direction. I posted the following comment on our Facebook group on Dec. 30: “We are holding steady and taking small steps. With each hour that passes and every small step that is made, I exhale a little and whisper prayers of hallelujah.”

Jan. 1-31

The New Year started with Eisley weaning down medications, doing CPAP trials to hopefully remove her breathing tube, and beginning feeds again. They extubated her for a time, but her breathing was so labored they had to reintubate. As the days wore on, we helplessly watched her abdominal area get bigger and bigger. Two weeks later, the surgeons determined she had developed necrotizing enterocolitis (NEC). That meant another round in the operating room in which they removed a portion of her colon and gave her a temporary ostomy bag. She later developed Drug Reaction with Eosinophilia and Systemic Symptoms Syndrome (DRESS) in reaction to one of her medications.

Feb. 1-29
February was even more of a roller-coaster month for Eisley. I labeled her a “medical mystery” as her platelets continued to drop despite multiple transfusions, her bilirubin remained high (producing yellow tears), and her belly continued to get bigger. She made two more trips to the OR and one to the IR.

Feb. 5 was an especially harrowing day. When I got to her room that morning I was greeted by an attending doctor who asked me our plan if she went into cardiac arrest. Eisley was struggling to breathe, and the doctors thought she was in septic shock. I thought we would lose our beloved daughter that day … but our brave Eisley pulled through! After putting the drain on her gallbladder, the next day her color was better, her vitals were stable, her breathing was less labored, and she even opened her eyes! “She made it through the worst day she’s had thus far,” my sister said, “and I’m thankful for one more day with her.”

The doctors decided we needed to have a care meeting with all the specialists involved in her care to determine whether she needed surgery on her mitral valve—a very risky surgery that held no guarantees. Every time a different specialist walked in and said, “She’s a very sick little girl,” it was a verdict that was hard to swallow. I knew she was sick. I was under no illusions about her condition. But I wanted with all my heart for her to defy the odds. I wanted her to turn a corner and shock the pants off all these medical professionals. In a Facebook post that day, I reflected: “Today I am so very thankful to be here in this room, tears brimming in my eyes because my baby girl continues to fight and is fighting hard. I am so thankful for another day with her. Thankful for good reports on her. Thankful for small victories. Thankful for family and friends who continue to lift us up in prayer and support us in this long journey.”

At the care meeting, they decided to postpone any further heart surgeries for two weeks to see if Eisley’s body could begin to heal. I was so relieved about this decision. Shawn was going out of town for a work assignment for two weeks, and the thought of sending Eisley into a risky surgery while he was gone was almost more than I could bear. During those two weeks, she showed small signs of improvement. Her chest x-ray looked better, her platelets began to hold steady, and her bilirubin levels went down. There were a few other small victories as well. They were able to wean her completely off fentanyl, which was a huge step forward. She had been on it as long as I could remember and at times she was almost maxed out—to the point that one pharmacist thought the nurse had asked for the wrong dosage because surely a baby couldn’t be on that much!

On Valentine’s Day I posted the following comment to our Facebook group: “Good evening

Holding my girl on Valentine’s Day.

to all! My heart has been on cloud 9 for a good part of this evening. I got to hold Eisley for an hour and a half. I haven’t held her in 40 days. It was the most wonderful Valentine’s gift I could have received.”

Later that week, I got a dreaded call from PCICU while I was at home with our big girl and Shawn was still out of town. They had to give Eisley chest compressions due to a mucous plug. I worried what implications that might have on her fragile body. Our next worry was that the doctors and nurses had some concerns that Eisley was having seizures, so they consulted neurology and ordered an EEG. Thankfully, the EEG showed no indication of seizures! I had joked many weeks earlier that Eisley demanded a lot of attention and wanted to see all the various service groups at the hospital. After neurology was called in, I told the nurse to go ahead and call nephrology so we could check that department off our list. Five minutes later a guy walks in and says, “Hi! I’m the kidney doctor.” He was called in to see if he could find a correlation between her low sodium, calcium, and potassium levels. (Personally, I think Eisley was just missing her chips and guacamole.)

Later in the month, Eisley’s SATs continued to drop randomly, she struggled with blood pressure issues, her gallbladder showed signs of inflammation, she suffered through drug withdrawals and delirium, and there was initial concern of a possible brain bleed. Despite all of this, I posted this comment one evening: “I’ve decided whatever will happen will happen and am going to trust God through this.”

March 1-12
Thankfully, a CT scan showed no indication of a brain bleed. However, we heard more disappointing news. Eisley’s labs and her lungs looked worse, and the word “septic” was tossed around again. They called in the hematology and immunology departments to get involved as well.

Her cardiologist was baffled by her case. He said he’s never seen a child survive fungemia (fungal infection in the blood) and viremia (viral infection in the blood) before. To be honest, there was no medical explanation for why she was still alive. During this time, she also contracted many infections including herpes simplex virus, CMV, aspergillus, histoplasmosis, pneumonia, and thrombocytopenia multiple organ failure (TAMOF). They performed a test to assess her heart function, and as my brother, Nathan, described it, “Her little-big heart has diminished in function.” The doctors said there was a 10 percent chance that she would pull through. And yet, we clung to that chance. As long as she still had a fight in her, we would be by her side cheering her on and loving every minute we had with her. As I wrote on a Facebook post during that time: “Despite all the tubes, wires, incisions & sores, when I hold Eisley all is right with the world and time stands still. Be still my heart, beautiful girl.”

Even with all the bad news, I was determined to celebrate her second birthday on March 8,

Birthday snuggles

which we did in grand style. But two days later, I was afraid we were going to lose her again. I ask the doctors to do what they could to help her pull through. March 10 was a special day for her big sister because it was her Forever Family Day. I didn’t want that day to be split between one of our family’s happiest events and one of our saddest events. In true Eisley fashion, she held on.

On the evening of March 11, we read her Good Night Moon for one last time. We spent the evening and the wee hours of the morning holding her, singing to her, and just loving our baby girl. For so long I had been praying that she would survive and turn a corner and become even more of a medical miracle. However, that night, I prayed the pain would be taken away and that the suffering would end. I whispered in her ear, “You fought the good fight. You were braver than anyone I’ve met. You held on for so long. You have suffered enough. Now it’s time to let go. Fly high little one. You are loved more than you’ll ever know.” She took her last breath in my arms, free of the breathing tube, which had supported her for so long.

Our fierce and tiny warrior.

Eisley had a strong spirit and fought so valiantly. It’s funny to remember that in the early days of her hospital stay I worried that her feisty spirit would interfere with her recovery. But this fieriness actually kept her going far longer than anyone would have guessed. In the end, the part of her body I thought was the weakest—her heart—was actually one of the last things to fail.

No one ever wants to say goodbye to his or her child. It isn’t something a parent should face. Perhaps rather than goodbye, we’ll consider our parting, “Until we see you again, beautiful girl.”

“Only in the agony of parting do we look into the depths of love.”
-George Eliot